Mayzoo Posted March 21, 2015 Report Share Posted March 21, 2015 I wish I'd been smarter about vaccines when DS was a baby. If it is any consolation, I was pretty conservative, and I still have a kiddo with autism and PANDAS and a few pretty severe birth trauma related symptoms. Link to comment Share on other sites More sharing options...
nicklemama Posted March 22, 2015 Report Share Posted March 22, 2015 I don't beat myself up too much. I trusted doctors. Now, I know better. It was a rude awakening. It puts me (and the rest of us here) in an odd position with the far vast majority. I'm sure my friends think I've really lost it. I'll never trust doctors again. They have done such a poor job on my son I'll never forgive them. He's been misdiagnosed too many times. For things other than PANS, unfortunately. Many no longer go into it to help people. They do it for the money, the ego, the social status. They are not like doctors used to be when I was a child. Link to comment Share on other sites More sharing options...
bws1565 Posted March 22, 2015 Report Share Posted March 22, 2015 I lost my trust in doctors too, unfortunately. I could have written the above post myself. I mean a doctor that vacs a child with fever?! 5 pediatricians unwilling to see my child due to not knowing what is wrong?! Needing to diagnose my own child (with a congenital problem) due to doctors ignorance, over the internet?! The system is really broke, and getting more broke. Thank you Obama. Link to comment Share on other sites More sharing options...
Mayzoo Posted March 22, 2015 Report Share Posted March 22, 2015 If I had trusted doctors, Kiddo would be blind in one eye, deaf in both ears and have needed a liver transplant by now . Good thing for her, I don't trust them. I have lofty goals I guess. I want to get her to 18 with her original organs in decent to good working order. Link to comment Share on other sites More sharing options...
nicklemama Posted March 22, 2015 Report Share Posted March 22, 2015 (edited) The system was broken well before Obama. He's not responsible for the training of the current batch of doctors. He does not hold sway over the AAP. Any problems lies solely with the medical profession itself. They don't get to escape responsibility by throwing blame on a politician. Edited March 22, 2015 by nicklemama EAMom and MomWithOCDSon 2 Link to comment Share on other sites More sharing options...
bws1565 Posted March 23, 2015 Report Share Posted March 23, 2015 I did not mean to bash Obama about the care of the doctors. I am getting increasingly frustrated in my healthcare. I have had the same insurance plan for several years now, and due to Affordable Care Act, my premiums are rising and less and less is covered. It is extremely frustrating to have to think twice before doing a necessary procedure, which was previously fully covered and now we are getting hit with copays, and coinsurances through the roof. I, personally, do not see what is "affordable" with this healthcare act ;(. Link to comment Share on other sites More sharing options...
Mayzoo Posted March 23, 2015 Report Share Posted March 23, 2015 (edited) I did not mean to bash Obama about the care of the doctors. I am getting increasingly frustrated in my healthcare. I have had the same insurance plan for several years now, and due to Affordable Care Act, my premiums are rising and less and less is covered. It is extremely frustrating to have to think twice before doing a necessary procedure, which was previously fully covered and now we are getting hit with copays, and coinsurances through the roof. I, personally, do not see what is "affordable" with this healthcare act ;(. Ours has gone down significantly because previously kiddo was deemed un-insurable in our state, so she had to be on a plan grouped just for un-insurable people. We paid 450.00 just for her, for that group. Had we gotten her a private policy (after they made it illegal to reject on pre-existing conditions but before healthcare.gov), we would have paid 950.00 a month just for her. Hubby and I were uninsured because we could not afford both her healthcare and ours, so we simply did without any medical care or insurance. We qualified for no assistance for any of us, but could not afford care either. Now, we pay 116.00 a month just for her. We have a catastrophic plan for us. We do get very minor subsidies for this, but that all the help we can get, and we will lose those when/if I can get a job from home. Sadly, we are one of the reasons you are paying more, but it was not our choice of course. We would not have chosen for anyone to suffer for us to get a "better deal." If hubby quits his job, we could ride on the coat tails of our kiddo's vast disabilities, but because we choose to try to do the "right thing" we are ineligible for any help, yet we can barely make it by ourselves (we barely earn above the limits). We would be better off financially for him to quit and us get medicaid, welfare, SSDI, food stamps etc...... That is not how we believe we should live. If we can work, we should work even though we are penalized for doing so. Her best friends parents both have never worked (but could) to my knowledge and have always lived off the state for their disabled 18 yr old. She goes to public school too. They can afford cable, chips, sodas, etc..... Things we would not likely have anyway, but can not afford. We know others who choose to live off their child's ADD etc.... and receive SSDI, food stamps, medicaid, etc because they will not work. I have to be at home to take care of her and home school her. I am trying to get a legit job I can do from home right now to help us out. If she went to public school, we were told she would never read etc..... Now, she reads at about a fifth grade level. She is still behind in everything, but I expect more than life skills from her. This has been an issue for kiddos entire 13 year life, so not just obamas fault. End rant, and I know you were not ranting about us btw. I was just ranting kinda with you and not at you . Sorry for the rant folks . Edited March 23, 2015 by mayzoo Link to comment Share on other sites More sharing options...
nicklemama Posted March 23, 2015 Report Share Posted March 23, 2015 I understand your frustration with costs of healthcare going up. Ours has been going up for 10 years. Each year the premium increases and the deductibles and out of pocket increases. My dh's employer self insures and they are passing more and more of the healthcare costs to employees. Add to that the doctors we see who take no insurance and it does add up. I have some suggestions for remedies but that's not for this particular message board. I am grateful to have health insurance where many others had none. I am grateful that the AHA has gotten rid of preexisting condition clauses, otherwise, my son would not be insurable except through an employer group policy. Link to comment Share on other sites More sharing options...
kim Posted March 24, 2015 Report Share Posted March 24, 2015 (edited) I will be adding to this post. This is some initial information. I have wondered about this, as Teresa Conrick does in the AoA article. Congugated HIB 1990 recommended for 2 4 6 and 18 months (there was a hib vaccine prior to this one more near end) Hep B 1991http://www.ncbi.nlm.nih.gov/pubmed/9464208PANDAS 1998....first studies of PANDAS kids The children's symptom onset was acute and dramatic, typically triggered by GABHS infections at a very early age (mean = 6.3 years, SD = 2.7, for tics; mean = 7.4 years, SD = 2.7, for OCD) http://www.ageofautism.com/2014/10/my-country-tis-of-pandas-and-pans.html My Country Tis of PANDAS and PANS Since 1989, the first 50 cases of PANDAS have multiplied across the United States. Like Autism, PANDAS has received the "special treatment" --irrelevant, genetic studies, doctor skepticism and not enough pertinent research. At a recent Microbiome Conference, I listened as both Autism and PANDAS/PANS were described as diagnoses that appear to be manifested behaviors that may originate in the bacterial and viral stew we each harbor in our guts. Those with an Autism diagnosis have an altered microbiome -- but why? And how does that relate to PANDAS/PANS? and Has there been an explanation for why cases began to first appear around 1998? Now if you read what Offit has to say, he is one happy camper if you can engage TH cells (hence memory B cells) in an infant which normally will not happen at the young age that these are given. HIB is particularly interesting in my mind because it is a bacteia not a virus (it was misnamed and never corrected). The early vaccine was a pure polysaccharide vaccine and it didn't work, just like the " polysaccharide only," s pneumonia that was given to adults wouldn't work in infants, hence PCV formulas (Pneumococcal Conjugate Vaccine). (he leaves out the mention of aluminum when describing formulations) https://www2.aap.org/immunization/families/overwhelm.pdf more on history of HIB vaccine http://www.nvic.org/vaccines-and-diseases/HIB/history-hib-vaccine.aspx Scientists began experimenting with a vaccine to prevent Haemophilus influenzae type b more than 30 years ago. One of the first ones was a polysaccharide vaccine that only induced protective levels in children older than 18 to 24 months old. When reinjection did not induce a booster effect at any age, researchers reported that, if they were going to achieve immunoprophylactic control of meningitis caused by Hib, they were going to have to come up with a more effective vaccine.1After researchers discovered that a conjugation process offered better effects, the first conjugated Hib vaccine, ProHIBIT, was introduced in the U.S. in December 1987 Edited March 25, 2015 by kim Link to comment Share on other sites More sharing options...
kim Posted March 25, 2015 Report Share Posted March 25, 2015 If anyone read the Offit et al paper, did you find it strange that he mentions one small study from Germany (496 children) regarding fewer infections in the vaccinated vs unvaccinated group? That paper is dated 2002, maybe there is something more recent, but for a country with the highest vaccination recommendations, don't you think we would have numerous studies like that? Link to comment Share on other sites More sharing options...
ajcire Posted March 25, 2015 Report Share Posted March 25, 2015 This is interesting to me because I got a hep b shot as a requirement for college... That same year at the age of 18 I develped severe joint issues with my fingers on both hands. This was pre the internet and we honestly never made the connection that it could be the hep b shot. instead we were trying to come up with things like stress related, lyme, weather related (it was cold where I went to school but it was cold where I lived before so it didn't make much sense.. and it happens now at any season but more in the winter) My parents took me to a rheumatologist who at the time just said arthritic like conditions.. I can go many years and not have any problems and then all of a sudden out of the blue it starts.. I have seen different rheumatologists.. tested negative for everything they tested for (lyme, lupus and a million other things)... My ds who has pandas did receive the heb b vaccine as a baby.. Link to comment Share on other sites More sharing options...
kim Posted March 31, 2015 Report Share Posted March 31, 2015 (edited) ajcire, That type of information may be imperative as choice is being threatened in multiple states (or lost already) in the case where you might want to try to get a medical exemption for vaccination. History of advese events and immune function testing results are going to be valuable for those who have it. The problem is going to be over coming the attitude that any immune dysfunction is going make it all the more reason that your child should be vaccinated with anything/everything that they can create a response to, no matter how unnatual (or inflammatory) the response is. Personally, I'm of the opinion that constant manipulation of the infant immune system is wrecking havoc on at least some of our children. This is not to dismiss genetics or other environmental insults. I also have full respect for any one choosing a particular vaccine where they feel the reward out weighs the risk. Unfortunately, it seems parents are going to have to be the ones who convince the medical "authorities." http://www.ncbi.nlm.nih.gov/pubmed/20531967 Biologics. 2010 May 25;4:75-81. Hepatitis B virus and Homo sapiens proteome-wide analysis: A profusion of viral peptide overlaps in neuron-specific human proteins. Edited March 31, 2015 by kim MomWithOCDSon and EAMom 2 Link to comment Share on other sites More sharing options...
kim Posted April 16, 2015 Report Share Posted April 16, 2015 (edited) For anyone interested in understanding Hep B titers, what is known about what is thought to be "protective levels," and fury over the continued practice of the birth dose, these excerpts are a good place to start. The "low incidence," was not a good enough excuse to leave my newborns/infants alone, but it "seems," unnecessary to worry about it now. http://npin.cdc.gov/news/hepatitis-b-infant-immunization-protects-through-adolescent-yearsHepatitis B Infant Immunization Protects Through Adolescent YearsUNITED STATES: Viral HepatitisHealio , 05/23/2014 Higher baseline antibody to HBV titer, older age at first dose of vaccine, higher test dose, nonwhite race, interactions of test dose, and marijuana use were independently associated with higher GMT response to the challenge dose of vaccine. The researchers concluded that the findings and the low incidence of acute HBV in the United States make a booster dose of vaccine seem unnecessary as part of routine immunization for adolescents. The researchers suggest follow-up tests with a similar population 20–25 years after HBV vaccine during infancy to investigate further duration of protection. http://www.medscape.com/viewarticle/483473_4 Our findings of the loss of anti-HBs over time in children vaccinated in infancy differ from those reported by some others. West et al[18] screened children at 12 years of age who had received a plasma-derived vaccine in infancy and were at low risk for hepatitis B exposure. None had anti-HBs <10 mIU/mL. Faustini et al[19] followed children at low risk who were vaccinated in infancy with a recombinant vaccine. By 5 years of age, only 7% had titers of anti-HBs <10 mIU/mL. A major difference between the children in those studies and ours is their age at initial vaccination. Those subjects were 2-3 months of age or older when they began their hepatitis B vaccine, whereas the infants in our studies began their series in the first week of life, a schedule recommended by ACIP. Indeed a study from Hawaii of low risk infants given recombinant vaccine starting at birth showed that only 19% had anti-HBs =10 mIU/mL at 6 years, yet all responded to a booster dose.[20] This suggests that starting the initial vaccination series later in infancy may result in better persistence of anti-HBs. However, starting at 2-3 months of age would not protect infants of HBsAg-positive mothers from perinatal transmission of HBV. Forgot to include this (for US-born 16- through 19-year-olds who received a recombinant HB vaccine 3-dose series). http://pediatrics.aappublications.org/content/133/6/e1500.short RESULTS: At baseline, 24% had protective anti-HBs levels of ≥10 IU/mL; Edited April 16, 2015 by kim Link to comment Share on other sites More sharing options...
kim Posted April 17, 2015 Report Share Posted April 17, 2015 ajcire, Your post reminded me of another document. If you read a generous inch down, you will see a paragraph that starts out ; Another area that leaps out of the VEARS database is something I dubbed arthritic reactions http://www.thinktwice.com/Hep_Hear.pdf This is from a subcommittee hearing in 1999. This is a great overview of the illogical risk that this vaccine creates for the majority of our infants/children in IMO. Link to comment Share on other sites More sharing options...
kim Posted April 17, 2015 Report Share Posted April 17, 2015 (edited) something else that I wanted to mention in regards to Hep B. If you read the vax insert it warns of allergy to yeast (Saccharomyces cerevisiae) as the surface antigen for hep b is cultured on genetically engineered s cerevisiae (and absorbed on alum. in most? cases...it's been a while since i looked at these). CONTRAINDICATION #4 Description #11 https://www.gsksource.com/pharma/content/dam/GlaxoSmithKline/US/en/Prescribing_Information/Engerix-B/pdf/ENGERIX-B.PDF If you want check more (all) here are the others http://www.immunize.org/packageinserts/pi_hepatitisb.asp I know I have seen it mentioned that some have tested positive to yeast in allergy testing on these forums. If you do a search of saccharomyces cerevisiae and irritable bowel or crohn's, there is some interesting reading. Just one example http://www.scielo.br/scielo.php?pid=S0004-28032010000300006&script=sci_arttext Antibodies anti-Saccharomyces cerevisiae (ASCA) do not differentiate Crohn's disease from celiac disease Edited April 17, 2015 by kim Link to comment Share on other sites More sharing options...
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